I am having my final takedown in 4 days so cant add much to the Jpouch side of things yet but I can say this. I am sort of an obsessive person when it comes to change and operations. I feel like I HAVE to figure it out. I bet we are pretty similar in that respect. Being a medical provider I find it easier to identify with folks in that way. I think I would say to you that you went through 2 completely different transitions in a relatively short period of time and folks tend to fall into a "new normal" gap once they get used to things. I had an end ostomy for 6 years. for the first few months, maybe even to a year, its just so new and shocking its hard to see the big picture. I can say though once I found the right products and supplies to take care of it, everything smoothed out and became old hat. I suspect it will be the same with the Jpouch. just a long obsessive year or so getting used to it ha. I agree with one of the above posts, you may be surprised if you can find a GOOD, reputable counselor at least until you figure out what will be "normal" for you.
In regard to not being well informed before hand, I think your surgeon may have did you a little of a disservice. I work in general surgery and people are SO different. some people want to hear every little detail, some would rather not know ANYTHING aside from risk and such. It is their duty to gauge that on the fly. I think the big thing is to ask tons of questions if you have them, even months to years out. that is what they are paid for. My surgeon sat with me as long as I needed and went as in depth as I wanted to go. He did say the most important thing for Jpouch surgery is to understand the transition period is often long, up to a year or so and a patient needs to be committed. Surgeons should understand this is a HUGE life changing operation and need to spend more time with these cases as opposed to just whipping out an appendix or gallbladder ha. so it seems your surgeon should have been a little more up front.
Your post seems like a very appropriate vent ha. most everything I read I bet if you get asked to read this 6 months in the future, your outlook will be a lot different and you will be doing better! I wish you a blessed recovery and in time I bet you are much better! have the right people around you, annoy your surgeon if you have to, find the products, supplies, bidet, creams, hand soaps etc through your own personal experience that works best for YOU and roll on with your new normal.
- Native